I think we’ve all seen the recent inflammatory article about people with Down syndrome. I can’t stop thinking about it or the debate that it’s brought to the surface–a debate that, if you’ve followed Down syndrome advocacy groups, you know is nothing new.
And by “debate” I actually don’t mean the abortion debate. In the article, Marcus does give some weak respect to parents with Down syndrome children and attempts to direct the message to the abortion debate. But this isn’t really about abortion. It’s about how we describe and think about people with Down syndrome, making it a disability studies issue. I’m so troubled by the way we treat people with Down syndrome, and how we callously discuss them without including them in the discussion, that I can’t ignore this.
Here’s a section from Marcus that I find especially problematic. She describes a person with Down syndrome as
a child whose intellectual capacity will be impaired, whose life choices will be limited, whose health may be compromised. Most children with Down syndrome have mild to moderate cognitive impairment, meaning an IQ between 55 and 70 (mild) or between 35 and 55 (moderate). This means limited capacity for independent living and financial security
Hidden in this article seems to be the assumption that a valuable life is one marked by good health, a high IQ (who cares about that faulty metric?), and financial security. Like Marcus’s imagined person with Down syndrome, I’m not financially secure as an academic. Many academics aren’t. I guess we’re in good company.
This is a view of the human person reliant on how much we can produce and how distinct we can be from the community. This is individualist neoliberal capitalism masquerading as the Left. Here, the human person is commodified. Be independent and financially secure, or you’re disposable.
As a personalist whose guiding philosophy and approach to being focuses on human dignity, I think every time we treat the other as disposable we actually reveal our gaps in understanding the human person. An anthropological error, or an outright lie about human dignity, is the first necessary step to say someone else is disposable.
The key error here is that a limited understanding of intelligence and and an emphasis on capitalist efficiency are the main markers of human personhood. I say “limited understanding” because there are many different intelligences, but we seem to overly value academic and technical prowess. A valued life for us as moderns seems to be an intellectual and financially productive life. Where does this leave room for the many varieties of human persons that bring us out of ourselves, or for us to just be as persons, to always have dignity merely because we are human persons?
I admit that the intellect is a sign of that ineffable something that makes us human, but it is not what actually makes us human. Smart people (whatever that means) are not more human, nor are they likely to be happier (is that our real end–fleeting happiness?). But the intelligent person does show us something important about the human experience and human dignity, just as the athlete can show us human excellence (arete) and the great ordering power of discipline.
This is a communal, rather than individualist, understanding of humanity. We are relational beings who understand ourselves more through encountering each other.
I firmly believe that the person with Down syndrome fits into this communal model of the human family where we show something to each other about what it means to be human. This is anecdotal, but my experience is that the person with Down syndrome reminds me of the essential human quality of joy. I don’t mean happiness. Human dignity lies beyond fleeting happiness. I mean loving, outward-oriented joy.
As an academic, I need this kind of influence. Our purpose is to seek out truth and to look at reality with openness, but it’s really easier for us to overvalue our pet model and be lost in our own vainglory. We need to encounter others whose gifts are different from our own to stay grounded in the truth, grounded in reality. We need the person with Down syndrome. If the current eugenics movement succeeds, we will–every single one of us–be diminished as a human community.
But I don’t want to fall into the same trap as Marcus by pontificating on what it means to be a person with Downs syndrome. That’s the important rejoinder Elizabeth Picciuto makes:
And when I speak of joy, I don’t mean that a person with Down syndrome can’t be moody, or stubborn, or fighting despair just like the rest of us. My real point is that they are persons just like you–capable of human excellence (arete) just like you–and that the most important aspect of a person is existence, not production. We need to meet them as persons with dignity, and see where they show us the ethical limitations of this ableist, capitalist system we’ve all bought into, especially editors like Marcus.
This is why I love the #AsIAm project of L’Arche. It gives us a chance to listen to people with Down syndrome with their unique voices and value.
Here’s the story of Sachiko,
And here’s Kara, who is about six months older than my own daughter.
Here’s River with his favorite cars. My daughter is suspicious of the blender too, River.
And here’s Wade. I identify with your stubbornness, Wade.
I guess I’m in good company.